Epilepsy: "When I was 15, I didn't know what epilepsy was, I wasn't afraid!"
Published 8 Feb 2021 • By Clémence Arnaud
LisaINBS, a member of Carenity France, has agreed to share the story of her journey and life with epilepsy to mark International Epilepsy Day on 8 February 2021.
Discover her story below!
First of all, could you tell us a bit about yourself?
My name is Lisa, I'm 25 years old, I'm a networker for a network marketing company focused on new technologies, wellness and health. I've been in a relationship and living with my partner for 8 years. I'm originally from the Parisian suburbs but I've been living on the French Riviera for 3 years. My interests have always been music, which I studied for a long time at a conservatory, and cinema, which I studied at the University of Paris.
What symptoms prompted you to seek treatment for epilepsy? How was the diagnosis of epilepsy made and how did you feel when you were diagnosed?
The symptoms that prompted me to seek help were the infamous seizures. They started (and continue to occur) the first time in my sleep. However, I wasn't diagnosed with epilepsy right away. Most of the time, you have to wait until you've had three seizures for the term to be "stamped" on your file! So, after my third tonic-clonic (grand mal) seizure, a diagnosis was made: juvenile myoclonic epilepsy (JME)!
Honestly, it didn't take very long to get diagnosed, since seizures are epileptogenic and one seizure triggering another... So this "quota" of three seizures was quickly reached. I must have passed into the expert hands of two or three neuropaediatricians during my time in hospital, but it wasn't until I was diagnosed that I was "assigned" an official neurologist. This neurologist monitored my condition until I moved to the French Riviera where I found an epileptologist.
Learning that you have epilepsy at 15 means everything and nothing at the same time because I didn't know what it meant. It took me a long time to understand that I would be "sick" for the rest of my life. Then I felt profoundly different and excluded, especially when I got to university when my second epilepsy came on, until I stopped suffering and accepted my difference, embraced it, changed my lifestyle and lived "almost" normally.
You have had juvenile myoclonic epilepsy for 10 years, what does this mean?
Juvenile myoclonic epilepsy (JME) is a form of epilepsy which appears in adolescence and manifests itself in tonic-clonic seizures (which happen at night for me) and myocloni (epileptogenic spasms without loss of consciousness).
In the majority of cases, people with JME end up with absence seizures (petit mal seizures), which is my case. They affect my frontal lobe, so I completely lose consciousness when I have one.
How has epilepsy impacted your education and your life as a teenager?
I was diagnosed at the age of 15, between my oral and written French Baccalaureate exams (the French equivalent of A levels). Honestly, high school wasn't very difficult to finish even though I was suffering from very severe fatigue and was dealing with weight gain from the new medicines I had started.
It became harder for me to keep up when I got to university, especially when I'd have my absence seizures. Trying to finish my degree while I was forgetting everything, while I was switching up my medicines and while I had started having seizures again after three years of stability.... It was a challenging final year of university for me on all fronts, but I got through it: diploma in hand and one medicine to treat both of my types of epilepsy.
What symptoms do you experience on a daily basis today? What impact do they have on your private and professional life?
As far as my epilepsy is concerned, today I am stable. At the end of the day, that's what we epileptics are looking for! My treatment "works", I don't have any seizures. So today, it has doesn't impact professional or private life at all.
How did your family and friends react to your diagnosis? How do they support you in your daily life?
I think that my friends and family were scared because epilepsy is an alarming condition to those who don't know it, imagine what it's like for someone to wake you up in the middle of the night because you're having a fit?!
I'm joking, of course. I'm actually not the first person in my family to have epilepsy, my older sister has it as well. This didn't surprise my neurologist at all at the time because JME is the most hereditary form of epilepsy. So my family and friends were well versed in what to do and above all, what not to do.
Do they understand epilepsy? I think it would even be a bit pretentious to say that I myself understand it. They are definitely understanding of it and are very supportive. It's helped me a lot.
Are you taking any medications for your epilepsy? How are you coping with them? Have you tried other treatments for your epilepsy?
I have been on treatment for my epilepsy for almost 10 years now. I have tried three medicines: Lamictal, Clobazam and Topiramate. I'm currently taking 300mg of Topiramate divided into 150mg doses morning and evening. It's a treatment that "works" for me, my seizures have stopped and it allows me to drive, work and overall live "normally".
But we can't ignore the enormous list of side effects, which are extremely hard to bear. First, the body has to get used to it for the first five months. Then the side effects diminish a little but also still persist. I've been on this treatment for five years and they're still there.
It's very complicated to "find the right shoe" for epilepsy so rather than find another treatment, I modified other things in my life to allow my body to fight the medicine which is very strong, but which still allows me to do so many things in life. I take dietary supplements, such as vitamin B for brain activity but also for absorption of macro and micro nutrients, I carefully monitor my hydration, I don't drink alcohol at all, I monitor my diet, etc. I've been taking dietary supplements for a long time now. These kinds of changes have allowed me to tolerate my treatment better and improve my quality of life as an epileptic.
Finally, what would you like to say to other Carenity members reading your story?
I was diagnosed when I was 15 years old, I took a first treatment that made me gain 25 kilos. The doctors then discovered that this medicine didn't work with my birth control, so I was given an IUD at 16 (without asking my opinion) and I gained another 15 kilos. Depressed by the life-long nature of epilepsy I let myself go even more... 40 kilos later and my "self-abandonment" at its peak, I couldn't even look at myself in the mirror and I wasn't even 20 years old! I hid myself behind various excuses: "Yes, but you don't understand, I'm tired, it's the epilepsy that's causing it.." or "Yes, but the doctor says that I can't do that...", etc.
The one day, it all just clicked: Yes, epilepsy is special because it is "invisible", it is extremely tiring and few people know about it, but I don't want to spend my life reduced to a collection of symptoms. Anything I can do on my own to improve my daily life, to put it within my reach, to try, to no longer feel pain, to not SUBMIT to the medication but live WITH it, I will do. When I came across this Carenity community, I found it informative and rewarding. That's what made me want to share my story.
Any final words?
Thank you for your interest in me and for asking me to share my story in honour of this special day. I hope that my adventure with epilepsy will motivate others, perhaps, to see things from a different perspective.
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